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  • Heartbroken.



    4 replies

    Hello everyone, My dad died 12/12/16.A date that will be imprinted in my heart and mind forever. He was very poorly from May last year, but somehow we never truly were ready for those stomach renching words " passed away". I was "Daddies Girl" even though I'm a married 54 yr old.My mum is 81 and is full time carer for my 51 yr old brother who has Downs Syndrome. My mum is being so brave and stoic, but my brother is not fully understanding that he will never see his dad again.He cannot read or write, but in his own way he has written letters to my dad and left them around home.This breaks our hearts. For mine and my mums part we wanted my dad to have his wish and die at home, but medication masked the ugly fact that he had Sepsis, so as we hoped for a better outcome , thinking it was a drug related drowsiness we sent him to hospital He did verbally agree to go for the paramedics but I feel only did it for us. We saw him on the Sunday and believe he heard and saw us, but died at 11:00 am on the Monday. We were not with him and I hate this fact.I know the HCA on duty was with him at the end, but it should have been his family. I hate myself as I am an HCA and over the years have been there at the end for my patients. The grief is torment at times, and I know my mum misses him beyond words. How do we help my brother?.We are drip feeding the brutal truth to him when ever we can, and are getting him a kitten, to bring more life into the home, something my dad wanted aswell, but dads " darling boy" is struggling with harsh reality. Always With You Dad.xx.

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  • Support

    Hi Debs,


    I am so sorry to read of the recent death of your father. Grief can be so overwhelming for us all to comprehend but it can be even harder for somebody with a learning disability. It is important to speak to your brother in a way that he can understand but to carry on as you are using the correct words even if they sound brutal to you. It is important that he finds a way to express his grief, so the letters he is writing may be his way of expressing his sadness. Now you say your brother cannot read or write, but don’t say what his general level of understanding is.  I have spoken to families with Down’s syndrome adults in the past that have said that some of the literature aimed at children has helped them to understand. There are really good short booklets which explain the dying process here: Perhaps you and your mum could look to see if you feel they would help. I have also found a specific fact sheet on Down’s syndrome Association which is linked here:


    Many people find it helpful to talk, and this could benefit you and your mum as well as your brother. If you would like to talk to us on the Support Line we are here Monday- Friday from 08:00am - 18:00pm T. 0800 090 2309. I have included a link to our support directories which will signpost you to many agencies which may be able to help you:



    Best Wishes



    Marie Curie Support Line


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  • Debs


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  • Twinkletoes

    Hi Debs, I'm so sorry to hear of the loss of your dad. I can totally sympathise & empathise with you. I lost my mum on 30 October 2016 to lung cancer. She had only been diagnosed 4 weeks previous so we had very little time to process her diagnosis, let alone her death. Our situation has so many similarities to yours. My mum was in hospital & desperately wanted to be home, we were making plans to take her home, unfortunately events overtook things. She too passed away without her family by her side, I had literally left an hour previously. I carry so much guilt for that & go through that night in my mind everyday asking myself why I didn't just hang on for one more hour. My youngest son is autistic & getting him to fully come to terms with his grandmas death has been difficult. He is aware of her passing, but because of his autism he finds it difficult to show his emotions & instead has been really lashing out & becoming quite verbally & physically aggressive. My dad passed away 14 years ago & that was so hard for me, I still struggle with his death but no I have lost my mum too I feel totally hopeless. I wish there was a cure for this awful disease, it ruins so many lives. I hope you, your mum & brother find some comfort from each other. If you'd like to chat to me as I'm going through a very similar process, please feel free to contact me. Sending love & best wishes Mairi

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  • Debs

    Hi Mairi, Thankyou for your message. I am so sorry you lost your mum recently.I feel your pain, but I am lucky as I still have my mum.My husband has been wonderful and I have good support at work, but it cannot take away the pain.Mornings are the worst when I wake and reality hits. I cannot believe I have to live the rest of my life, without my dad.He was an incredible man.Like you I am haunted by not being with him at the end.I think I am coping well, but my ensuing fear is what happens when my mum goes.Will it eventually be me or my husband left with my brother. Our world is already too quiet and lonely.We have no children, and any family that we are in touch with live in Bristol.I don't think I could cope with this intense loneliness and grief. My brother is not understanding that dad will not be coming back, but he is now starting to cry.They now have a kitten, and it is helping, but I know we are all feeling the same heartbreak of the empty rooms and chairs.Christmas was truly heart breaking. My brother is displaying some anger, but he does not normally become physically agressive, and I hope it remains this way. Did I see fro your post that you have to wait 6mnths or more for support for your son?.Surely this would not be good. Please feel free to keep in touch. Sending you love at this dreadfull time. Debs.

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